Psychosocial impact of raising a child with autism spectrum disorder - Essay Example

?Psychosocial Impact of Raising A Child with Autism Spectrum Disorder Background of Study Autism Spectrum Disorders (ASDs) forebodes a variety of effects to family members--from the parents and siblings who serve as primary caregivers, and the relatives as supportive system to the whole family. Autism Spectrum Disorder is clinically identified as a lifetime impairment in neurodevelopment. It is an umbrella term for “autistic disorder, Asperger syndrome, and pervasive developmental disorder” (Kogan, et al., 2008, p. e1149). In part, this is characterized by a variety of symptoms, ranging from lack of social interactive and communication skills, to apparent restrictions and hesitancy in behavior systems--all of which can be observed at an early age (Ring, et al., 2008). The social and behavioral deficiency in early childhood life makes these children vulnerable, and liable to be overly dependent on their families for basic care and general support. As autistic disorder is a condition that is experienced all throughout a person’s existence, it is little wonder that parents and other support systems can experience a variety of challenges, as well. Yet, Harris (1994, as cited in Schopler & Mesibov, 1994) explained that such condition may be biological in source, but the developmental improvement can further be delayed by the type of response the family demonstrates towards the child--in the physiopsychological dimension. Emotionally unstable family caregivers cannot meet the demands and needs of children with disorder, further forestalling the intellectual and social capacities of the this vulnerable group. The fate of the child’s developmental progress, then, may largely depend on the amount of support the family gives to their young member in need. The paper, then, seeks to ascertain both the positive and negative impacts of caring for a child with autistic disorder, taking into account sources for such reactions and the circumstances aggravating the demonstrated feelings. Objectives of Study The major purpose of undertaking this project proposal is to gain a deeper understanding and insight on the diverse impacts surrounding the family of a child with Autism Spectrum Disorder (ASD). Furthermore, the paper seeks to obtain the actual experiences of each family members as they care for their child with ASD. In specific terms, the researcher aims to: - Assess the difference in lifestyle before and after having the child with ASD. - Identify the positive and negative aspects in caring for a child with ASD. - Determine the psychosocial reactions and their adapted coping mechanisms employed by each members of the family. Significance of Study The parental and sibling reaction towards the care of children with ASD can vary, and may range from constructive to nonconstructive ones. Montes and Halterman (2007, p. e1041) had been vague in stating that having a child with ASD can significantly affect the “marital and family functioning.” In such assumption, the extensive study may serve as groundwork for further study on what goes within a family system in such situation. The qualitative investigation can generate a broader viewpoint on the probability of familial crises within the support groups upon dealing with a child with neurodevelopmental impairment. Through better awareness on the strength and weakness in adjustment efforts and sacrifices, there may be progress on accepting the care for children with ASD. In substantial appeal, the parties involved in the care of children with ASD can benefit from such study, as the paper may serve as an eye-opener on possible deficiencies in behavior and attitude adapted in the said circumstances. In indirect terms, the children with ASD can reap the rewards of modified care perceptions, as they serve as recipients of better management brought by improved values assimilated by families and relatives. On a wider scale, health care practitioners can accommodate the results of the study, reflect on them, in relation to their professional practice, and integrate the revised psychosocial concepts in families for better health care provisions (Skinner, et al., 1999). Review of Related Literature As recorded in the 19th century, a brief textual passage on the existence Autism Spectrum Disorder had been portrayed through a young adolescent, named Victor; who inhabited a forest in solitary isolation all through his life (Turkington & Anan, 2007). In the year 1911, a Swiss expert, Eugen Bleuler, coined the term autism, in response to his hypothesis that individuals with such status possess “self-absorption due to poor social relatedness with schizophrenia” (Gupta, 2004). Leo Kanner, the pioneering expert on “early infantile autism,” had broken the chain linking autism with other mental impairment in the year 1943--reasoning that the former is a disorder of its own (Feinstein, 2010, p. 168). His breakthrough had been vague in its early conception, paving way for several doubts in the psychology field. The final printing on standards in psychological practice, DSM-III, halted this, stating that autism is under the classification of “pervasive developmental disorder,” definitive bracket on aspects in social and communicative interaction, and intellectual cognition (Gupta, 2004, p. 4). The difference, thereby, lies on extent of neurological management, where the latter requires anti-psychotic medications, while the former is handled through comprehensive understanding of supportive family systems--encourage behavioral improvements in children. The misrepresentation of ASD as a form of schizophrenia manifests morbidity of such condition. The American Psychiatric Association (2010) laid out the benchmark for identifying children with ASD, with the inclusion of four main categories: dysfunctions in social interactions, behavioral repetition and isolation, the early onset of symptoms, and extent of symptomatic restrictions to activities of daily living. Diggle and McConachi (2009) explained that ASD is a dimensional condition, rather than a distinctive category pointing to a specific status. This implies that ASD forms diverse degrees of symptomatic parameters, making it difficult to identify. Contrary to clinical opinions, the neurological impairment does not necessarily extend to intellectual cognition, as studies reveal that only a quarter percentage in samples are seriously impaired in intelligence (Fombonne, 2005). ASD, then, is more of a problem on psychosocial behavior, rather than cognitive functioning. Lord and Bishop (2010, p. 4) insisted that the definitive criteria in assessing the presence of ASD is through its common patterns of behavior, “difficulties...of social communication and restricted, repetitive behaviors or interests.” Reaching out to children with ASD can result in gaps on communication patterns and associative bonding. In this instance, the challenge is drawn between family members and children with ASD--bridging the gulf created by social effects of ASD and adapt quality care mechanism in the process. The support of family members serve as stable foundation for these children to successfully thrive. Yet, DeMyer (1979, as cited in Schopler & Mesibov, 1984) discovered that having a child with ASD generates profound impact on the family as a whole and as individual members. In general, caring for a child with ASD can inlfluence “family finances, employment and time” (Kogan, et al., 2008, e1153). The overall management can be expensive, affecting the stability of families. To a point, parenteral, parent-child association, and sibling relationships are also put to a test. The implications seemed more on the negative side, rather than the positive. The attachment, according to Konstantareas and Homatidis (1992, as cited in Ritchie (2004) can be impeded in the presence of ASD. The lack of skills in connecting with people isolates the child against parenteral affections. The lack of attachment not only affects the child, but also their parents as well. In the presence of ASD, parents had been found to develop mechanisms that keep them from emotionally responding with the condition of their child. In other cases, they also manifest lack the participation with necessary social interactions (Piven, et al., 1997). The result only shows the gravity of ASD in the family, where they develops inappropriate defense mechanisms. The experience of raising a child with ASD can be quite a challenge; for others, a nightmare (Memere, 2008). Mothers are in direct contact with children in all aspects of their growth--from physical to mental, and emotional dimensions. Hence, they are purported to suffer mental and emotional strain of the parenting role more readily than the paternal counterpart (Posavad, 2009). This time, it seems that maternal functions are more heavy compared to their partners, giving the impression that mothers need the support more. In current findings, paternal responsibilities are neglected when the child is discovered to have developmental disabilities. They react by keeping their distance from their child, hoarding paternal affections due to the discrimination of the imperfect character in their child (Mchatton & Correa, 2005). Though this is not conclusive, the research shows the tendency of fathers to cope by escaping from the crises situation. Even the siblings harbor ill feelings, immaturely perceiving the abundance of attention towards the sibiling with ASD as one of neglect to other children in the family (Schopler & Mesibov, 1194). The (physical, mental and emotional) stress of caring for the child indeed affect the family on individual terms. This is even aggravated by a number of factors, ranging from the degree of intellectual and social malfunctioning, extent of assistance in performing activities of daily living, and the scope of understanding the family maintains regarding ASD (Schieve, et al., 2007). The higher the level of aggravation is, the more difficult it is for the family to manage. However, Kausar, et al. (2003) contradicts other studies by pointing out the positive reinforcement brought about by the child with ASD, where such circumstance promotes feeling of determination in reaching their long-term goals, becoming sensitive to other’s opinions, and assuming a more compassionate and confident nature in facing adversities. These changes are due to the fact that they have a child who fully depends on them. Nonetheless, the impact of caring for a child with ASD encompasses more than psychosocial effects, as it brings forth the elements of physiologic influence and socioeconomic status in the overall context of ASD. Research Methodology Locale of the Study The proposed study is set to be conducted in the region of Kent, South East England, specifically in one of its district--the borough of Swale. As presupposed by Lainhart (1999, as cited in Swanipoel, 2003), Europe is said to be one of the widely studied in terms of raising for a child with autism. The said county possesses an estimated land area of 373,000 hectares, occupied by 1,589,7000 citizens, while the district in Swale has about the size of 37,340 hectares that contains a population of almost 124, 400 people. In comparison with other districts in Kent, Swale has the third largest population, and is still holds potential for continued growth. Looking for the appropriate samples for the study can be challenging, as the district of Swale only has an occupant density of 3.49 people within the area. Fortunately, household types are more on the category of familial, married, lone parents (Office of the Deputy Prime Minister, 2004; Swale Borough Council, n.d.). These type of households can be an advantage, since they serve as primary target samples for the study, making the survey a lot easier to execute. Sample The targeted respondents of the study will be the family members of the children with Autism Spectrum Disorder (ASD). The family may consist of immediate relatives, such as the father, mother, siblings, and other relatives in direct interaction with children having ASD. Instrument Qualitative data can be collected in different manners, depending on the information necessary to complete the study. In the paper, the experience of family members are essential, hence, their reactions and subjective views must be collected in detail. In carrying this out, the tool appropriate in data gathering ranges from personal intensive interviews to providing sets of structured questionnaires that seek to answer specific experiential areas of raising children with ASD. Aside from the proof provided by survey questionnaires, it is equally important to utilize audio recording and/or video recordings as valid instruments in gathering relevant data (Morse & Richards, 2002). Study Design To fully acquire the psychosocial impact of caring for children with ASD, the research will employ the qualitative type of research design. A number of categories are under this type of study, but for this paper, phenomenological approach forms the basis of the research methodology. Litchman (2010) describes this as a method that draws comprehension from actual experiences of selected persons or groups in a certain event. In the paper, the lived reactions of family members upon living with children having ASD serve as definite phenomenon that requires close scrutiny. As the manner of study is in danger of drawing biases, it is suggested that preconceived notions on such event must be eliminated prior to implementing the project; especially since the study moves beyond revealed subjective experiences towards conceptualizing the core elements in such events. In critical analysis, the qualitative data analysis on live experience can be safely performed in the presence of several parameters. First of all, collected data must be appropriate and maintains content validity and reliability. Biases in data construction must also be scrutinized, looking for loopholes which points to early and prejudiced conclusions. Lastly, the information at hand must be fit the description of the research, otherwise, the whole methodological process will fail in futile attempts (Bell, 2005). These are only some of the measurements that assures accuracy and objectivity in the paper. As the research paper progress, several analytical technique may be modified to suit the goals of the research study on families caring for children with ASD. References American Psychiatric Association, 2010. Autistic Disorder. [Online]. Available at: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94 [Accessed 16 February 2011]. Bell, J., 2005. Doing your research project: A guide for first-time researchers in education, health and social science. 4th ed. England: Open University Press. Diggle, T.J.J. & McConachie, H.H.R., 2009. Parent-mediated early intervention for young children with autism spectrum disorder (Review). The Cochrane Collaobration. [Online]. Available at: http://www.cochranejournalclub.com/SSRIs-for-autism-sepctrum-disorders-clinical/pdf/CD003496_standard.pdf [Accessed 16 February 2011]. Feinstein, A., 2010. A History of autism: Conversations with Pioneers. Malaysia. Blackwell Publishing. Fombonne, E., 2005. Epidemiology of autistic disoder and other pervasive developmental disorders. J Clin Psychiatry, 66, pp. 3-8. Gupta, V.B. ed., 2004. Autistic spectrum disorders in children. New York: CRC Press. Kausar, S., Jevne, R.F. & Sobsey, D., 2003. Hope in families of childern with developmental disabilities. Journal on developmental disabilities, 10 (1), p. 35-46. Kogan, M.D., et al., 2008. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122 (6), pp. e1141-57 Litchman, M. ed., 2010. Understanding and evaluating qualitative educational research. United Kingdom: SAGE Publications. U Lord, C. & Bishop, S.L., 2010. Autism spectrum disorders: Diagnosis, prevalence, and services for children and families. Social policy report, 24 (2), pp. 1-27. Mchatton, P.A. & Correa, V., 2005. Stigma and discrimination: Perspectives from Mexican and Puerto Rican mothers of children with special needs. Topics in early childhood special education. 25 (3), pp. 131-42. Memere, B.S. ed., 2008. New autism research development. New York: Nova Science Publishers. Montes, G. &Halterman, J.S., 2007. Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119(5), pp. e1141-45. Morse, J.M. & Richards, L.., 2002. Read me first: For a user’s guide to qualitative methods. United Kingdom: SAGE Publication. Office of the Deputy Prime Minister (2004). [Online]. Land use change statistics (LUCS) Guide. Available at: http://www.communities.gov.uk/documents/planningandbuilding/pdf/150313.pdf.[Accessed 16 February 2011]. Piven, J., Palmer, P., Jacobi, D., Childress, D. & Arndt, S., 1997. Autism phenotype: Evidence from a family history study of multiple-incidence autism families. Am J Psychiatry, 154 (2), pp. 185-90. Posavad, J., 2009. Acknowledging mother’s lived experience of raising a child with autism: A phenomemological inquiry. [Online]. Available at: https://dr.library.brocku.ca/bitstream/handle/10464/2934/acknowledgingmot00posauoft.pdf?sequence=1 [Accessed 16 February 2011]. Ring, H., Woodbury-Smith, M., Watson, P., Wheelwright, S. & Baron-Cohen, S., 2008. Clinical heterogeneity among people with high functioning autism spectrum conditions. Evidence favouring a continuous severity gradient, Behavioral and Brain Functions. [Online]. Available at: http://www.biomedcentral.com/content/pdf/1744-9081-4-11.pdf [Accessed 16 February 2011]. Ritchie, T.L., 2004.The loss of a dream: Parents raising an autistic child. [Online]. Available at: http://krex.k-state.edu/dspace/bitstream/2097/1231/1/TiffanyRitchie2008.pdf [Accessed 16 February 2011]. Schopler, E. & Mesibov, G.B. eds.,1994. Behavioral issues in autism. New York: Plenum Press. Schieve, L.A., Blumberg, S.J., Rice, C., Visser, S.N. & Boyle, C., 2007. The relationship between autism and parent stress. Pediatrics, 119 (1), pp. s114-21. Skinner, D., Bailey, D.B., Correa, V. & Rodriguez, P.,1999. Narrating self and disability: Latino mother’s construction of identities vis-a-vis their child with special needs. Exceptional children, 65 (4), pp. 481-502. Swale Borough Council. (n.d.). [Online]. Demography and social trends. [Online]. Available at: http://www.swale.gov.uk/assets/Planning-Forms-and-Leaflets/Planning-General/Planning-Policy/Local-Development-Framework/Topic-1-Demographics.pdf. [Accessed 16 February 2011]. Swanipoel, Y., 2003. Primary caregivers’ experience of raising children with autism: Phenomenological perspective. [Online]. Available at: http://eprints.ru.ac.za/164/1/swanepoel-ma.pdf. [Accessed 16 February 2011]. Turkington, C. & Anan, R., 2007. The encyclopedia of autism spectrum disorders. United States of America: Infobase Publishing. Read More